Limbo Land

nickrider

Hi, all. I have just joined alzconnected today. After scanning the topics on this Forum, I did not see any that really covered what is on my mind. So.....

My wife has mild cognitive impairment, diagnosed April 2020. She began to have memory problems in Fall 2019. Things have gradually, albeit slowly, progressed since then. Now, language, executive function, visual-spatial ability, and speech are also impacted to some degree. We both are retired healthcare professionals and have a clear, and realistic, idea of what lies ahead. We are very open in our communication with each other and derive unyielding, unerring support from each other. I have told her I am honored to be on this journey with her.

She went to a private, solo neuropsychiatrist in April and was put on Aricept. He felt she had "presumed Alzheimer's and wanted to do the requisite tests. After the testing, his revised diagnosis was MCI. Since then, she was seen virtually at one major academic center's memory clinic and in person at another center. (We moved from North Carolina to Maryland in the midst of this, which triggered the need in our minds to get hooked in with another memory clinic in Maryland.) Both academic centers agreed that things are not right, tho neither was willing to make a diagnosis. 

As a retired physician, my sense is that she has a mixed dementia picture, altho her father had AD. 

While it is a bit frustrating to be in this limbo of knowing, acknowledging, talking about, and accepting the changes that are in front of us versus not evidently having reached a level of badness that the memory experts are willing to afix a diagnosis, we just keep keeping on. I work to allow her the space to do the things that bring her joy - which is not at all hard for me to do. 

Just wondering if others have been on this same path or had the same feelings at some point.

60 falcon

Hi and welcome.  It took a couple of years before the docs would say DW has early onset Alzheimer's.  She had several tests to role out other possible causes.  She was seen by a couple neurologists, a neuropsychologist, her PC.  They all wanted to say depression, MCI, etc.  Eventually one of the neurologists ordered a PET scan and he then diagnosed her with Alzheimer's.  It was a long frustrating experience.

You've come to the right place for support and information, and to just vent when you feel the need.  There are a lot of great folks here with a lot of experience.

SteveOD

My experience seems to track closely with yours. My wife's diagnosis at this point—"early stages of dementia syndrome ... mostly likely Alzheimer's"—is unclear, mostly because I see her struggling with things I would have absolutely expected this highly capable woman to be able to master a couple of years ago. I see signs of many different Alzheimer's stages in her behavior, so it's not a shock that her evaluators have not attempted to pinpoint where she is on the continuum.

In 2020, we moved from North Carolina to Oklahoma to be closer to our daughter's family, and my wife, who spent her career the mind-boggling complexities of putting together property insurance programs for her multinational corporate clients, could not evaluate the differences among the handful of quotes we received for insurance on our new home.

She, too, is on donepezil (Aricept), starting with 5 mg daily and eventually going to 10 mg.

My biggest confusion is over how she is dealing with all of this. Once an acutely analytical person—someone who would have asked a million questions of the plumber replacing our garbage disposal—nodded agreeably in response to everything the neurologist said, and had no questions for him. (Who are you, I thought, and what have you done with the woman I married?)

I can't get her to talk about this, though. Her memory issues are an inconvenience at worst, as far as she is concerned, and I cannot get her to engage in realistic plans for the future (she has talked about getting a job in the new year, for instance).

SSHarkey

Welcome to the forum. As retired medical professionals, it’s hard to not hard the definitive answers. You’ve spent you entire professional life diagnosing and treating. Unfortunately, you well know that when it comes to this spectrum of cognitive loss, we often find ourselves without exact answers. Our neurologist summed it up to us this way - If it walks like a duck and quacks like a duck, it’s a duck. It’s certainly been the case for us. We’re treating the symptoms, adjusting to the new current needs, changing on a day to day basis. We’ve had to let go of the exactitudes and learn to live in the now. As much as I want an idea of process, what and when to expect the next phase, I am stepping back from that and trying to just enjoy the now. It could change tonight/tomorrow. Not easy for those of us that want it in black and white with timelines.

Beachfan

Welcome aboard; sorry you need to be here.  Briefly, my DH was diagnosed MCI back in May, 2010, by our PCP.  I was told that 50% of all MCI cases develop into full blown Alzheimer's.  I didn't see the need to investigate further; just visit PCP every six months and keep him aware of progression.  DH was prescribed Aricept and Namenda; the Aricept has been discontinued as he progressed.  50 mg. Zoloft was added for agitation; he still takes Namenda and Zoloft.   Fast forward to today, and DH is solid stage 6, requires 24/7 supervision and care for just about everything. (He appears to be a typical Alzheimer's patient, without the behavioral variant.) As you are a retired physician, I can understand your interest in investigating all aspects of you DW's condition as you come to grips with what is happening.  From a practical standpoint, my advice would be to make sure all your legal ducks are in order, do all the wonderful things you want to do while you can still do them, and don't go looking for trouble. You may experience all, some, or none of the horrors associated with this disease.  No sense worrying about what might not happen.  

This forum will prove a godsend.  Nothing is off limits, everyone has a tip, a resource, a solution, whatever you may need at the moment.  And VENTING  is tolerated, encouraged and respected.  Happy New Year.  2021 has got to be better, even for us caregivers and our LO's.  

Gig Harbor

My husband had mild memory issues in 2010 and was 71 at the time. Today he has no memory for anything new and is just starting to forget things he has known for a long time such as what he usually eats for lunch. He acknowledges that his memory is terrible but says he can’t help it and I just need to deal with it. He has no curiosity what the future will be like. He does not see that I do everything and on bad days when I tell him that he just laughs. I can’t complain because he is always in a good mood and is able to take a 3-5 mile walk a day thru our town. It is a lonelier existence than  if I was living by myself. Each night I find a movie for him on TV and he happily watches it but can’t remember anything about it when it is done. He seems totally happy with his life and has no worries or concerns about the future. He assumes that I like doing everything and that it is really not that much for me to do. Such a weird life but the only thing that is certain is that it will get worse.

M1

Hi Nickrider.  I am also a health professional, semi-retired internist, with a partner who is now stage 4-5 after a good six years of slowly progressive symptoms.  We never have seen a neurologist and have no formal diagnosis either--we tried Aricept and Namenda through our internist, but there was no tolerance and bigtime side effects quickly (she's on lots of other meds for other issues).  But really, I'm wondering what you think a formal diagnosis would change?  My bet is not much, unless you want her enrolled in research studies.  We considered that also, but my partner backed down after being contacted by the nearby tertiary research center.  She didn't want to commit the time, as we live on a farm about an hour outside the city, and the travel is hard on her.  Plus, most of the time she's unaware of her deficits.

So, overall, I doubt if you're losing much by not having a formal diagnosis.  But maybe there's something else you're thinking?  Welcome to the forum, this is in fact a very helpful place for support and practical information.

Iris L.

SteveOD wrote:

 I see her struggling with things I would have absolutely expected this highly capable woman to be able to master a couple of years ago. 

Welcome Nick and Steve.  I am a patient with a diagnosis of cognitive impairment not otherwise specified.  I was a pediatrician in my career life.  I had to take a sudden leave of absence due to memory loss many years ago and was never able to return to work.  As you may know, the NOS diagnosis has been removed from DSM IV. 

The doctors can do only so much diagnosis-wise.  Dementia is a diagnosis of exclusion.  Just make sure they have tested for everything, including sleep apnea.  In early 2009 I was given a trial of Zoloft, which did nothing.  Then in May 2009 I had a trial of low dose Exelon patch.  Immediately I noticed some improvement.  I advanced to the higher dosage, later Namenda was added.  I am satisfied with how they are helping me.  They don't help everyone.

On these message boards I learned about Best Practices, to improve functioning and to prolong the early stages.  I can attest that following Best Practices has helped me go from being close to needing assisted living to being able to live independently and to travel internationally.  

A few years ago I had an Amyvid PET scan which determined that I don't have Alzheimer's Disease.  In my case, my doctors have attributed my symptomatology to contributions from systemic lupus, anti-phospholipid syndrome, hypertension, and sleep apnea.  My MRI shows leucoairiosis.  As of now, I am not interested in any more diagnostic studies.  

Diagnostic studies point to treatment.  The treatment is Best Practices and avoiding stress.  Some medications are contraindicated for certain diagnoses.  This is also why diagnostic studies may be necessary.  

The other treatment modality for the dementias is to manage the environment and to avoid stressors.  I noted the phrase above, "struggling with things."  This is the disease:  we struggle with what we had no trouble with before.  It took me a while to accept that it is okay for me to make my life easier and to do things on a lower intellectual scale.  The majority of people I know don't accept that I am not a doctor any more, or that I can't follow medical conversations or that I am no longer even interested in anything medical.  Now that I am older, it is easier, because I can blame being retired for lack of interest.  But my lack of interest is due to long term memory loss.  

If you notice your LO is struggling, please accept this, and figure out how to make things easier.  

As much as you can during these restrictions, do things you like to do as a couple.  Do your bucket list.  It will be too late soon.  Avoid expectations.  Make your LOs life easier and more comfortable.  Read Alz+'s posts on the YOAD board--she has a lot to say about adapting, especially with family members.

Read a lot of the postings and post a lot.  It will help you to be engaged.  You won't find better support than here.  

Iris L.

grace1220

Iris L. wrote:

On these message boards I learned about Best Practices, to improve functioning and to prolong the early stages.  I can attest that following Best Practices has helped me go from being close to needing assisted living to being able to live independently and to travel internationally.  

I am interested in the "best practices" here. How do I search to find out about them? Thank you!

grace1220

Iris L:

 "On these message boards I learned about Best Practices, to improve functioning and to prolong the early stages.  I can attest that following Best Practices has helped me go from being close to needing assisted living to being able to live independently and to travel internationally."  

I am interested in the "best practices" here. How do I search to find out about them? Thank you!

SteveOD

Iris L.:

Thanks for your perspective. At the moment, it is frustrating to be unable to find the right balance. Sometimes that's because my wife cannot accept that she can't do what she used to do, and sometimes it's because she isn't ready to accept my trying to make things easier for her (and coming dangerously close to "mansplaining"). I try to address this head on, telling her to let me know when she feels patronized. And, since she just started with the donepezil, I'm also hoping we see some abatement of symptoms over the next few months.

You know. It's the familiar "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

nickrider

My thanks to everyone for this bounty of postings. All your perspectives are helpful and informative.

I think while I feel that a specific diagnosis will help us understand what is likely to lay ahead, I also feel a diagnosis will help affirm that we are not missing something else - something eminently treatable. Certainly, all the variants of dementia are not treatable/curable. And that is something that my DW and I are okay with.

We go back late next month for a second visit to the nearby academic center's memory clinic. They might want to do more neuropsychological testing at that point, i.e., a second round of that. There may not be much point to another MRI or repeated blood tests. She is not interested in another LP. And we don't think she would do well with a PET scan, given her medical history.

In the meantime, we focus on each day, each opportunity to be together, each moment of laughter, each grieving of a lost ability, and each dose of being in the present. She is a very remarkable woman, my greatest teacher, the bravest soul I know, and it is a gift to be with her. That is what I cherish. And will always cherish.

Cynbar

You have been given some excellent input here, as well as a sense of the support you will feel going forward. Of course, you should continue to pursue a clear diagnosis, it will give you some blueprint for the future. It's natural to want answers, we all do. But I must gently add that a diagnosis will not give you the clarity you are seeking. Even within the same diagnosis, there are tremendous variations among patients in the symptoms and path they will follow. All dementias are progressive, but it's very difficult to predict where you will be next month, next year and so on. This uncertainty has been one of the biggest hurdles for me to get past, giving up the idea that I can know absolutely what is ahead. You will read a lot on these boards about difficult symptoms to manage, but always remember that not all of them will happen for you. Whatever your final diagnosis, it's really about getting your legal/financial affairs in order and then taking it one day at a time. We are all here to help. There is probably nothing that someone here has not experienced.

LadyTexan

Welcome Nickrider.

Our journey began in 2016 when I noticed things were off with my DH. He was 53 at the time. He was having problems with his career and he was drinking abusively. He stated nothing was wrong. After 5 car accidents in 13 months, I convinced him that something was indeed wrong. I joined this forum in 2018.

The PCP suggested Korsakoff syndrome and the testing began. Drinking was discouraged. Neuro-psych testing, lab work and interviews were performed. The PCP next suggested Normal Pressure Hydrocephalus. We were referred to a Neurologist in a well respected medical center in central Texas. The neuro-psych testing was repeated, The Lumbar Puncture at the well respected medical center was a disaster and unsuccessful. The Dx was then mixed dementia unspecified.

I researched other care providers and it took me several months and many many phone calls to get my husband in to see a highly regarded Neurologist in Austin. An additional MRI was performed.  Finally a PET scan was performed that incidentally was not covered by insurance. The PET scan led the Neurologist to conclude "probable Alzheimers". That Dx was 2/27/2019.

The road to dx was long and difficult. And frankly, disappointing to hear the term "probable" but now I understand why. 

The Neurologist referred us to a social worker. DH was prescribed Namzaric. We have not seen the Neurologist since.

Through a series of unfortunate events and a trip to the psych hospital (instead of jail), DH connected with an excellent Geriatric Psychologist. She has been a life saver!

This forum, without a doubt, has been tremendously helpful in providing support and real life actionable advice to me as we trudge this journey. Here I learned about the importance of legal and financial planning. I learned about acceptance. I learned about the unexpected but common occurrences in a dementia household like confabulation, missing remotes, dirty dishes in the cabinets, etc.

I am sorry you have a need to be here, but I welcome you and encourage you to participate.

God bless you.

jfkoc

Once all tests have been done to rule out causes for what you are seeing that are treatable you simply must live with what seems like limbo land. As you wife progresses the diagnosis my become more refined and as that happens the drugs used to help her come under scrutiny.

That said, whether limbo land or somewhere else, you are faced with the care of your wife and likely have no real description of that role.

Studies have shown that non-medical treatment is important and maybe even more effective than drugs. This makes you an extremely important element in your wife's care so your task is education.

Fortunately education is available....here, online, books and support groups. I urge you to read and post on all of the forums.

I got the most help from I'm Still Here by Zeisel but others will tell  you about their favorites.  I also urge you to go online and look at Abe's Garden and The Hearthstone facilities to get an understanding of what care involves. I cite these two because they are online and are tuned in to ongoing ideas affecting dementia care. I also like I Remember Better When I Paint.

While doing all of this learning please look to your financial and legal matters. You want everything in place early on. This involves DPOA's, living wills, health directives, trusts and such.

You see, whether in limbo land or elsewhere your job is the same. It is the same challenge.

I look forward to getting to know you......

ElaineD

Dear Nick,

I know how validating an accurate diagnosis can be.  I was 71 when I received the validating diagnosis that was also the unifying diagnosis that explained all the variety of  'conditions' that plagued me from birth.   The diagnosis of my very serious immune disorder did not, however,  provide any CURE, cannot stop possible progression, nor does it provide  effective treatments for most of my conditions.

Everything I've learned here tells me that an 'accurate diagnosis' of the variety of brain diseases/disorders that afflict our Loved Ones, is often elusive, and usually provides us with (almost) no medical solutions. And at the  present time, no cure.

So what can we do?  We learn to live with our 'new normal' which will surely change over time.  We learn acceptance and coping strategies that improve the life of our LO, and help us maintain sanity and achieve some measure of serenity.

It is NOT easy.  My DH was a PhD. biomedical researcher at a major medical school, transplantation immunology was his field.  He transplanted hearts and kidneys into rats, dogs, and even goats. He taught medical students, mentored graduate students, received many awards, published many research papers.  His work is part of the foundations of the successful heart, kidney and other transplants that are part of our lives today.

And now........he is the victim of the vascular dementia that runs in his family.  It all seemed unimaginable to me, and I thought it was tragic for him.  But it isn't tragic for him at all.

In fact right now he thinks his 'memory problems' are normal for his age.  This is what he tells all of his doctors.  And this in spite of the fact that one of his older sisters just died in her Memory Care facility, in the end stage of her VD.  

He is calm and relaxed (more so than ever in his life), he watches the same TV shows over and over, goes for walks, cuts out wooden puzzles, and thinks all is well.

I answer the same questions over and over, deal with the fact that he opens packages and puts the contents away and then completely forgets what came in the box: 'what box?' he says. 'Oh, that box.  I don't know'.  So I see a pile of the box contents, and realize what came.  He is absolutely unconcerned.

I hear him talk about things that didn't happen when he's on the phone with his family.  I hear him tell people he has Sickle Cell Anemia, when he has Chronic Lymphocytic Leukemia (in total remission).   Once upon a time he knew the difference.  His former self would be shocked at his present self.

But he doesn't know, and even more confounding to me, HE DOESN'T CARE.  And so he is reasonably happy.  I, on the other hand, do care, which only makes me sad, angry, fearful.  

So I need to accept this new reality (which is only going in one direction), learn to live in this moment, and provide him with the love and acceptance he needs, and plan for a future that will surround with with love and safety.

Is this easy?  Is this what I thought my life would be?  My disability, his disability, both require my acceptance and adjustment beyond my wildest dreams.  That's why I'm here.  This forum is what holds me up, leads me forward, gives me hope.

Because I am so disabled, I will not be able to give him the physical care that the future probably holds.  But I have put in place the plans that will provide him what he may need.  And that will provide for me the care that he has been giving me, in my disability.

Be of good hope!

Love, ElaineD

Iris L.

grace1220 wrote:

I am interested in the "best practices" here. How do I search to find out about them? Thank you!

Grace, Best Practices are lifestyle habits that we patients embrace.  Some of us have found them to be helpful.  Note: they are not promoted as a cure for any of the dementias.

Best Practices include:

--taking medications as prescribed

--eating the Mediterranean Diet, with many anti-oxidants and omega-3 fats

--exercising vigorously to tolerance

--continuing to stimulate the brain with new learning and other activities

--continuing to socialize.

We also get good, restful sleep, avoid stress and consider alternative or complementary treatments if interested.  There have been many posts about Best Practices on the YOAD board, but more so in prior years.  

Iris L.

grace1220

Thank you Iris! I got it!

SteveOD

 ElaineD wrote:

But he doesn't know, and even more confounding to me, HE DOESN'T CARE.  And so he is reasonably happy.  I, on the other hand, do care, which only makes me sad, angry, fearful.  

Elaine:

 

I am in similar circumstances. Yesterday, my wife asked about a printed form on her desk. "Do you know anything about this?" she asked. It was a form that she'd received only the day before, via FedEx, from the company that administers her pension—a form they sent in response to a call we made to them. When she received the FedEx package, she had remarked that they didn't have to send it with such urgency.

 

Except that my wife is depressed, angry that her old life is gone, eager to be back living in a world that no longer exists. She feeds and refeeds the cats many times a day, and says they're not eating. She insist on watching specific shows, and then sleeps through most of each episode.

 

I just wanted to say that I understand what you're going through, and I sympathize. None of us would have chosen things to go they way they are.

 

Steve

ElaineD

Dear Alzfriends,  I had another example yesterday of my DH loss of long term memories.  This one just floored me.

4 years ago DH was diagnosed with Chronic Lymphocytic Leukemia.  DH asked for treatment with a monoclonal antibody.  Three years ago DH began a series of six monthly infusions (IV) which took all day at his oncologist's infusion center.  

At the end of the 6 months his CLL was GONE.  It was in Total Remission (TR).  It could not be found in blood tests OR in bone marrow taken from his hip. Ever six months he is tested by his oncologist, and so far no sign of his Leukemia.

Recently we had a friend get this diagnosis, and his wife asked for advice and our experience with CLL. 

My DH does NOT  remember that he had any infusions. He had SIX!  When I reminded him, and mentioned that the infusions were with a monoclonal antibody, DH 'sort of remembered' that.  But had NO memory that he had had six 5-hour long infusions!

DH asked for the name of the medication, but when I printed out information DH wasn't one bit interested in reading it! I'm pretty sure  DH didn't remember asking for the information.

And he seems completely unconcerned that he didn't remember any details of what was recent MAJOR medical treatment.  

 DH doesn't even remember his own recent important life events.  But he can talk on the phone with high school class mates in his home town (which he LEFT 60 years ago) and discuss all the people and events of 60 years ago in great detail, over and over and over.  I hear his end of the conversation.

I'm still dumbfounded when relatively recent events have disappeared from his memory (Italy, Ireland, and Germany in 2015, 2016, 2017) 

I cannot imagine how I will deal with the future.  I try not to think about it, actually.  I am depending on your kindness!

Elaine  

CStrope

@SteveOD, I completely get where you're coming from.  For a little over 2 years, my DH was able to convince me that everyone that said he was having issues, were just being jerks!  His PC doc tried to convince him to have an MRI 2 1/2 years ago, and he managed to turn it around and believe that she was just trying to rack up unnecessary tests.

I think deep  down I knew something was wrong, but didn't want to confront DH, and just didn't want to go there.  So now, here we are almost 3 years later, and he's been diagnosed with AD. (after MRI and cog. testing)  In some ways I'm glad we didn't know 3 years ago, and in other ways I wish I had known.  The past 3 years were filled with a lot of disagreements and stress.  His inability to carry on relevant conversations and constant memory issues were a huge source of problems.

My biggest problem since diagnosis, is some of the same things you mention.  My DH was a high school science teacher for 30 years, and when the doctor gave us the diagnosis and explained everything, he quietly nodded his head to everything being said.

Since that day of diagnosis, there has been zero conversation concerning his diagnosis.  I'm a planner and detail person.  He does not/will not talk about what this all means for our family. No discussion as to "wishes" he may have for the future.  So, as long as I take care of everything and make sure he's happy (aka don't require anything of him!), everything is just fine.  So I spend my days working my job, and taking care of everything, and he spends his days copying out of old books he used while teaching.  He believes that will "cure" him.